Thursday, 19 November 2009

The Translator Resigns

Well, in the titanic battle that is Barrett vs The services: round # 603 went to Rory! He has just been approved for 3 resource teaching hours a week. It only took three months, 60 phone calls, a small woodland dell worth of paper, a large lump of expletives and a crash course in relaxation techniques. We were lucky this time to escape with only minor bruising and some superficial wounds.

The outcome of Barrett vs Crumlin Hospital is less clear however. A week after my last post, and completely out of the blue, we received another letter reverting our appointment back from Jan. 27 to the original date - Nov. 18. Confused? I hear ya! Needless to say, the other kidney had re-arranged work and could no longer make it on Nov 18; the new correspondence only giving us 48 hours' notice. So, we will now re-revert (if you follow me) to the January appointment. I'm feeling both battered and baffled.

Another notable notch in our battle belt was recorded last week; it appears our services have been transferred out of Enable Ireland. Steady on! It's early days, and I fully expect a mega misunderstanding before we so much as get within a whimper of another ologist, but it's these little victories that get me out of bed on these dark, damp mornings!

If and when, a therapist or ologist appears out of the murky mist of the HSE West, trust me, you'll be the first to hear about it!

Translation? I give up!


Thursday, 12 November 2009

Reasons to be Grateful

I can't believe it's two years since this day; and this one. The anniversary of the transplant that kicked off this blog is being celebrated in style in our house. To all of you who have walked this road with us, we say: thank you, from the bottom of our remaining internal organs!

Please know that you have played a fundamental role in our survival and success. So raise a glass to organ donors everywhere, but in this week of rememberence, let us also think of those who have not had our good fortune.

Thank you for sticking with us: it has made a really big difference in our lives.

Cheers, (she said raising her glass..)


Friday, 6 November 2009

Lost in Translation.

Why must I stupidly insist on using norms from the real world, when experience has shown me that the rules on planet HSE are very different? Whether from innocence, indolence or ignorance I'm not sure, but I repeatedly fail to decipher the secret scripture of the health service. For example: when is an appointment not an appointment? I've recklessly been walking around all these years, using various reputable dictionaries as my point of reference when I didn't understand the meanings of certain words. For instance, with a word like appointment: I understand it to be a noun meaning an arrangement to meet at a certain time at a certain place. Please feel free to correct me if I'm mistaken here.

With this in mind I had cause recently to ring Crumlin Children's Hospital, (ah yes, my old Nemesis), to confirm a pre-op plumbing appointment for Nov. 18. After tearing through some telecommunication traps, I eventually happened on a fellow human being at the other end of the line; a rarity these days. After barking a request for Rory's rank and serial number, she confirmed his appointment for said date, time and place. Great, now I had it in writing with a follow up phone confirmation. I figured I was pretty safe in the assumption that, I indeed, did have, an appointment. However, less than 17 hours later, a letter arrives: changing that appointment. Confused? I know I was.

OK, so here's the thing: did my phone call set off a whole chain reaction which led to alteration of the appointment? In which case, wow, in under 17 hours, they work fast! I think you'll agree, given past experience, that is most unlikely. Or, is there, somewhere buried in the bowels of Crumlin hospital, a left hand, who surreptitiously changes everything that the right hand, above ground, is doing? Apparently, I now have an appointment for 27 January next, which by the way, will be almost 12 months after the appointment was first requested. Could this be the case? It might be; but then, I'm too terrified to ring and confirm it.

Recently, Rory received a diagnosis of Dispraxia from his Occupational Therapist. With such a diagnosis, he is entitled to have three hours a week, one to one, extra resource teaching in his school, to ensure he doesn't fall behind his class mates. The report was sent to the National Council For Special Education (NCSC), by all accounts: a most reputable Quango. The reply was another exercise in definition dodging. When is Dispraxia not Dispraxia? Well, apparently, in NCSCeese: ' when it doesn't impact on your education in school'. I didn't realise you could successfully complete an education when your brain had major problems telling your body what to do. Seemingly, under the new NCSC definition: Dispraxia's a doddle. For all they know; he may only have a touch of Dispraxia, or the OT was having an off day, when she wrote the report. A diagnosis, after all, might not mean he actually has the condition - in NCSCeese, so to speak.

In an effort to comply with a whole new public service dictionary, we will now occupy more scarce school time and resources filling out more forms and reports, in order to re-define an established condition, with a view to meeting the criteria of the Irish system. Are you still with me here? Exhausting, but brilliant: you see without this duplication of duties, you could never justify the numbers employed to stop children getting access to their entitlements. You couldn't make this stuff up; but, obviously, they can.

To the HSE and the Dept. of Education: I bow to your bureaucratic brilliance. I am in awe of your awfulness. I am humbled by your lack of humanity and intelligence. It is reassuring to know, in these days of fiscal frugality; that you are doing your utmost to keep meagre resources tied up in paying mad Mandarins, rather than furthering children's health and welfare.

Some day, when I finally learn to speak fluent HSEese, I might be able to make sense of all this: but until then, I remain, confused.